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Featured Student: Jennifer Shoskes

NORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD Student Chapter and where she hopes to see her career go working within the rare disease community. For more information on NORD’s student programs, click Read more >

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8th Biennial Conference on Glut1 Deficiency

The Glut1 Deficiency Foundation will be hosting its 8th biennial conference on Glut1 Deficiency on July 11-12, 2019 in Washington, DC. The organization is excited to get together with patients, families, and professionals as we meet, share, and learn in this historic and exciting location!

Bridge the Gap’s 2nd International SYNGAP1 Symposium

From November 26-28 at the Scripps Research Institute, Bridge the Gap’s 2nd International SYNGAP1 Symposium will bring together scientists and clinicians actively involved in SYNGAP1 research with experts, trainees, young investigators and underrepresented minorities.

UCLA Vasculitis Patient Conference

The Vasculitis Foundation and the University of California Los Angeles invite you to attend their 2018 Vasculitis Foundation Patient Conference on November 10th. The conference will hold a variety of presentations from eight guest speakers on an array of topics

NORD Creates Rare Disease Patient & Caregiver Resource Center

One of NORD most popular resources is the Rare Disease Database. In any given month, 80% of the traffic to the website goes to one of NORD’s Rare Disease Reports. Many years ago, before the Internet, these online reports were printed and mailed to patients and caregivers. Now, in 2018, NORD offers webinars, videos, fact Read more >

Living Rare, Living Stronger NORD Patient & Family Forum

Join NORD this June in Houston, TX for a very special gathering! The 2019 Living Rare, Living Stronger|NORD Patient & Family Forum will bring the rare community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connection – in an atmosphere of support and understanding – plus fun! Read more >

Leveraging Real-World Treatment Experience from Expanded Access Protocols

Building on the Reagan-Udall Foundation for the FDA’s work with FDA and other stakeholders to develop the Expanded Access Navigator, the Reagan-Udall Foundation is convening stakeholders from government, industry, academia and patient groups to discuss process issues that include: Increase understanding of the expanded access program Identify and discuss strengths, challenges and opportunities Discuss what could Read more >

Urgency for Early Identification and Diagnosis of Treatable Neuromuscular Diseases in Infancy

Early diagnosis of the underlying cause of hypotonia in infants is challenging given the extensive differential. However, early therapeutic intervention in treatable neuromuscular disorders, specifically Spinal Muscular Atrophy and Pompe disease, preserves muscle function, improves quality of life, and increases survival rates. Attendees will attain an enhanced understanding of early clinical presentation and current management Read more >

Free Webinar – Open Enrollment for Health Insurance: What You Need to Know

With deadlines to select health plans for next year quickly approaching, the National Organization for Rare Disorders (NORD) is holding a webinar to aid rare disease patients and caregivers in navigating what may be a confusing process. Join NORD’s policy team on Tuesday, October 30 at 3pm (Eastern Standard Time) for an educational webinar about Read more >

Updated Study Analyzes Use and Cost of Orphan Drugs

Washington, D.C., October 18, 2018— Despite a record-breaking number of new approvals, orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the U.S. in 2017, according to a new study released today by the IQVIA Institute. The study was commissioned by the National Organization for Rare Disorders Read more >

NORD IAMRARE HI Global Registry Launched

Yesterday, a NORD Member Organization and IAMRARE™ Registry Client, Congenital Hyperinsulinism International (CHI), officially launched their patient registry, HI Global Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare diseases with extensive input from FDA, NIH, patients, organizations and experts in the field. We are pleased to Read more >

2019 PAP Enrollment

Program Participants (English) Thank you for taking the time to re-enroll with NORD’s Patient Assistance Programs for 2019. Please download and complete the following forms and return them to NORD via email, fax, or by Thursday, January 31, 2019. Please reference the email that was sent to you for the correct email address, fax number, and Read more >

Three Big Reasons Not to Miss the 2018 NORD Rare Summit

1. Raves About the Rare Summit “Inspiring and Informative. Brought me to the realization that though I may feel my ‘disease’ is the only one – there are many who have their own struggles.” –Research Nurse III, Cincinnati Children’s Hospital Medical Center “Incredibly valuable meeting to connect stakeholders, share information and provide inspiration and motivation.” Read more >

NORD Announces Ten New Rare Disease Registries, Thanks to Multi-Year Grant from Shire

Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten new rare disease registries, made possible through a multi-year grant award from Shire. NORD’s IAMRARETM Registry Program provides a web-based tool to collect patient experience Read more >

NORD 35th Anniversary Blog Series: 2010-2018 (Present)

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant role over the years, advocating for what matters most and making Read more >

Patient/Caregiver Opening Address Announced for NORD Rare Summit

One of the unique aspects of the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit is its theme, “A New Era of Patient-Focused Innovation,” which we will be examining from a variety of perspectives. Kicking off the Summit will be the Patient/Caregiver Opening Address featuring a panel of young rare disease patient advocates sharing their hopes, thoughts Read more >